Hi Pete, yes sleep is a precious commodity, which I get little of. My problem is getting to sleep, no matter what I take. Get to sleep around 4am and then do sleep good till about 10-11am. Don't nap during the day usually. I'm trying real hard to adjust my sleep cycle, like a new baby. The neck pillows you blow up for airline travel really makes my neck more comfortable. Blow it up about half way and put it in a pillow case. Have a ruptured disk and RSD likes it there too. have full body 13 years following an operation. Let us know if you find something new! Take care, loretta

I used to crave sleep but only be able to sleep 1 night every 2 days. It was horrible! Now I sleep every night in bursts of about 3 hours. I usually go to bed between 10 & 12 PM, sometimes at 8 PM, even 6 PM. I wake up every 2 to 3 hours, usually the first 2/3. It's not set in stone, I can wake up anytime, actually. If I'm lucky I'll sleep 4 hours but usually I am awake for the rest of the night until it gets to be 5/6 AM, then I finally sort of crash and sleep for a longer amount of time, until noon and most times lately even beyond noon. It's like I'm in a different time zone. It's very hard to wake me when I crash. I have tried getting up in the middle of the night, avoiding the crash sleeping that I do, but it upsets the whole balance because I'll start falling asleep at noon if I do. I do tend to fall asleep during the day too no matter what. I have gotten very tired in the last couple of years or so, I don't know where it comes from. Maybe it's the lack of a good sleeping pattern.

I have always had sleep issues and with rsd it has become so much worse. I can go a couple nights with no sleep and when I do sleep I am up every few hours. I have tried multiple meds and self help techniques. I do know many nights I am woken up by my leg pain and how stiff I get. I can't be in one position too long or I really cramp. The problem lies though I can only lay like a mummy due to the legs or to get up and walk around. I also think at night my anxiety is at a peak. I have tried the relaxation tapes,watching tv,no tv,music etc nothing. Makes for extra long days. Many thoughts

Me too, Daniella, I can't get comfortable and usually wake up from the pain and/or from being in an uncomfortable position. Sleeping with two RSD legs and arms isn't easy. The arms are being treated and it's going well so far, fingers crossed, but it's still awkward. I also have developed lower back pain and have some damage here and there (luckily not in the spine). It's thought to be due to bad posture from the RSD. Sleeping is hardly fun, I know. I can relate.

Dew, I think Loretta created a positive post about Opana. I did show my wife that post and she said she may run it by her PD. The wife, half the time, falls asleep sitting up because of the pain, maybe Opana will help. Keep us posted on the benefits and pitfalls of Opana. Thanks

I don't move at all once I am in bed. I have once an awhile fallen asleep with my legs bent and an hour later I woke up that way but usually I lie like a dead person so to speak. It seems my reflexes are off. Anyhow on the posture issue I know that I compensate. My back went out from this issue for 3 months almost. I am trying to work on being more even with my body but it is hard when one body part feels like it will fall off from pain what does one do? I hope once I get better teatment to work on that. I always know that when my left leg is in a bad flare up that within days my right leg which is the "better" will act up cause I use it extra. Sending wishes

I don't move much either. If I'm in the same position for too long then I start to feel it and wake up. I have a special small pillow now, one that fits in between my legs like a wedge when I'm on my side; it's very soft and is made of the same materials as a Tempur mattress. It keeps my knees from touching. Before that it was regular pillows and it wasn't all that great. It still isn't but it's an improvement. I move at least three times a night, one side, the other, my back.

I liked Provigil & wouldnt have been able to function during the day without it when I was on Fentayl for pain. It made me so sleepy& fatigued. But I got used to it & needed a higher dose & its very expensive & then I changed pain meds thats for now not as sedating so I am trying to go without it. I also am lucky enough to at least have drug induced sleep. I take a low dose of Geodon at night to sleep. Its a life saver. If I dont take it I dont sleep. Recently it started not working or if I flare too much it wont work well. So the next rescription I fill will be increased a little. I build a tolerance to my meds something awful. It seems to take 6 monthes to 18 monthes depending on the med. I have another friend who takes serequel. Which is Geodons equivalant to sleep & its helped her too. Its something to consider talking to your doctors about. Especially if you have any depression problems.

Please, all. Be VERY careful with Seroquel.
It's an "Atypical" drug for schizophrenia, and BiPolar disorder, (as are some of the other drugs being discussed).
I've seen people "act out" as if drunk on these meds, and turn the entire world of the house upside down. Then, a day later don't remember a thing! I find (and I've tried them) them not worth the risk. Google them, and you'll see a world of attorneys with their dripping fangs out, looking for lawsuits.

There is a WORLD of common sense things you can do, to sleep well, instead of having a doctor just write a 'script for a drug that the companies literally "Push down their throats", and the side effects are incredible. Just the weight gain! I've seen/heard of 110lb + weight gains!
Please,, get a sleep test, rule out apnea, see if you need a c or bipap.
But make these meds your LAST choice!
You may wreak havoc on your family and your body!

It seems to me, that many of us "Forget", to worry about our pain when we're sleeping. We can let our meds run out by bedtime, but, that may be when you need it most! Point in fact: DEW.

Peace on all,

Pete
asb

sherrie
OMG is all i could say first off. and thank god that you and your daughter are safe!! i have taken that med on and off for years but im not usually out early in the morning .. and if i have to i wont take it that night,,, here lately i havent been takin at all since it really has done anything. and i have also started nortriptylene for migranes and that is helping me sleep some .. when i say some i mean like 3 hrs a day total LOL.. i also sleep with a huge old body pillow as for one i cant sleep on my pump which os on my right side so i have to lay on the left or on my back. 2 i just cant sit still in the bed alot of the times i end up on the couch.. i wish there was so miracle thing not even a med that could help us all sleep .. i bet we would feel so much better

its great to have this conversation with everyone

carrie